Mis-Information....is Not Information

I was looking on the Internet for some medical information about which I knew something, but wished to know more. I came across a web page where some of what I wanted to know was discussed, and it answered a little bit. I continued the search as I'm sure others have done before me and will do after me.

 Unfortunately, there are some people who get on medical web pages and attempt to answer questions posed by others seeking to know more, when they don't know more. Or perhaps they know some, but don't have a complete understanding. At least, their understanding doesn't cover what they are attempting to answer.

When a patient has a disorder that affects several systems of the body as does POEMS or Marfan's, the disorder is said to be a 'syndrome' as opposed to a disease or illness. It may be a disease, it is an illness, but it may be such that it is called a syndrome.

However, I read on a web page where an attempt was being made to answer a question about Gilliam Barre. The statement was made that 'a syndrome means the doctors don't know the cause' of the illness. This is not true.

Examples:

Marfan's Syndrome is a syndrome because it covers almost every system and organ in the human body. But it is caused by a defective gene. Doctors know this, they can't prevent it, and don't have a cure. But they do know the cause. Marfan's is little known, even in the medical community. Not only is it rare, but many patients die from it without being diagnosed while still living. Some attempt to give information on Marfan's without full knowledge of what is known.

POEMS is a syndrome because it affects every system represented by the letters in the name. Doctors don't know the cause. But it is labeled 'syndrome' because of the affects it has on the PNS, major Organs, the Endocrine glands, has a Monoclonal gammopathy, and causes Skin changes. Doctors are still searching for the cause of this syndrome while attempting to treat the diagnosed. It is very rare. Unless there are many more of those who have not been diagnosed, but have it anyway.

According to medical information I have from reliable sources, Gilliam-Barre's cause is not fully known. There are suspects, but none have been clearly identified as the confirmed source as yet. But it is a syndrome because it affects more than one system in the body. It attacks the nervous system, but that is not the only system that is affected.

It is closer to having it's source identified because it begins sharply and suddenly as opposed to POEMS which can be silently masquerading while displaying some symptoms and affecting other systems without obvious symptoms. And Marfan's displays it's symptoms, but most doctors don't recognize them for what they are and misdiagnose. This leaves many young people at serious risk of sudden death.

Anyway, when I read that an illness or disease is 'called a syndrome because doctors don't know the cause', it upset me a little. Suppose this same individual gets on other sites and gives out false information that affects people to their detriment?

I hope I have not stepped on any toes out there today. But I just had to vent over this.